Monday, March 23, 2009

What happened to Max: Up to the moment we knew something was terribly wrong

This is me standing on our deck on Dec 4, 2002, my due date. I get both happy and sad looking at this photo. Happy because I look so excited. And that's Max, beautiful Max, inside my big belly. Sad because I obviously had no idea what hell the future held.

It had been the snowiest winter in years, and Dave and I kept worrying that we wouldn't be able to make it to the hospital. That snowy day, though, I wasn't ready to go.

I'd had a wonderful pregnancy. Some intense exhaustion during the first trimester, no nausea. After that, I was my usual high-energy self. I've never been the most thin person in the world, so having a bulging stomach didn't bug me. I loved feeling the baby moving inside me, loved hearing the galloping heartbeat at the sonograms and seeing the shadowy blob who would be my child, loved eating with abandon. In the evening, when I came home from work and Dave met me at the train, I'd raise my shirt as I walked over to the car and show him my belly, like a flasher, and we'd laugh every time. For entertainment, we'd lie in bed and watch my belly ripple.

We were so ready for Max.

I had a history only of baby love. I babysat from age 10 on, was a camp counselor in my teens, volunteered at a cancer hospital's pediatric playroom in my twenties, ogled babies on the street all the time. I assumed, with what I now see as hubris, that my baby would be born healthy. I was. We'd had no trouble conceiving. My pregnancy was uneventful.

We painted the baby's room a cheery apple green, spent way too much on fancy crib bedding, took a childbirth/newborn class in which Dave had such trouble getting the diaper on the doll I thought I would go into labor right then and there from laughing so hard. We were both hoping for a boy, even if we wouldn't admit it. We'd decided on Max, and Mia if it were a girl. We liked Max a lot more. It seemed like such a strong, feisty name. My mother, knowing that we were looking for an 'M' name in memory of my grandma Minnie, didn't like Mia and had inexplicably suggested "Mignon." My response: "And her middle name can be Filet!"

At around 5 a.m. Tuesday, December 9, I woke up feeling crampy. I dialed the doctor on call and she told us to drive to the hospital. I remember standing in the shower and thinking, Last shower I have before I become a mom.

At the hospital, I got pitocin to induce labor, then an epidural that didn't work, then a second one after I said some obnoxious lady-in-labor things to the anesthesiologist. But, nothing. Hours went by. I wasn't allowed to eat yet that didn't stop Dave from downing a big Subway sandwich in front of my face (some things, you never forget). Several times, I was given oxygen. Finally, I started pushing. The doctor was not my usual beloved one; I'd met him only once before. There were two nurses. We chatted and even laughed, about what, I don't recall.

Max didn't progress. Me being me, I wanted to keep pushing. Finally, around 11:00 p.m., they decided on a C-section. It wasn't an emergency or anything; it was all pretty calm.

They wheeled me into the operating room, covered my lower half with a sheet, drugged me up at some point. I felt a lot of pressure, then suddenly heard a baby's wail. "You have a boy," a doctor said (there were a few of them in there). Dave got to hold Max first. He was standing behind me, and I can vividly picture looking over my shoulder and seeing him staring so wondrously at the bundle in his arms. He was in awe, and he was in love.

Max was pink and perfect, not at all wrinkly or ET-like as newborns can be. He had amazing Apgar scores. "Even pediatricians' kids don't have Apgars like that!" a doctor joked.

The rest of the night is a blur: cuddling Max in a tiny room where they parked me while they waited for a real room to open up. Me not quite believing that, yes, an actual baby had been inside me all those months. This one. Begging for water and being told I wasn't allowed to drink, then making Dave smuggle in a cup of ice chips. Finally getting a room. Trying to breastfeed in the dark for the first time as Max cried and wouldn't latch on but kinda-sorta finally did. And then, morning.

My mother and sister came to visit at around 11. As I tried to feed Max, he stopped breathing and turned blue. Dave ran out and got a nurse. She came in and whacked Max on the back. "Mucus!" she said, by way of explanation. My mother and sister looked worried. Max seemed OK after that.

A couple hours later, as I held him, he stopped breathing again. This time they whisked him away to the NICU.

My body was healing from the C-section and I still wasn't able to walk, so Dave kept going to see Max, who was in an incubator. I forced myself to get up in the early evening. As we waited at the elevator bank to go to the NICU, there was a doctor standing there. Glasses, young, a little nerdy. He nodded at us. "Did they use forceps during your delivery?" he suddenly asked me. I'd never seen this doctor before, and thought it was a bizarre question (as it turned out, Dave had spoken with him in the NICU). I figured maybe he was looking for people for some research project or something. "No," I said. "Why?"

"Because your baby is having seizures," he answered.

And that's the moment when I went from the happiest day of my life to the most devastating one. I couldn't have imagined how much worse things were going to get.

51 comments:

Ellen - Thank you for sharing this personal story with us. I have tears in my eyes as I got to the end and knowing how scared you must have been with that one statement.

Over a year ago I wrote out Little Dude's story and posted it. I have found that I have come back to it time and time again and am so glad I put the thoughts into words. http://elfexpressions.blogspot.com/2008/03/back-story.html

You have inspired me to post it again this week to his blog. I am going to put some thought into it and re-do it with the perspective of being 18 months out from the diagnosis instead of 6 months.

I hope that you find telling the story to be cathartic and that Max treasures it as he grows older.

Ellen...I have always loved your profile picture. You look naturally pretty and so happy. Now I finally know WHY...who knew that there was a big, happy belly attached!!!! What a nice surprise to see the rest of the photo :-)I know telling this story is hard for you. You don't have to do it...but the fact that you are, I think, speaks to your character. You know that in telling your story you are going to help someone else. You know that in telling your story that you are honoring Max's birth experience. You know that in telling your story that you are healing your heart. Max is so lucky to have you for his Mommy. xokate.ps...I bet we'd have fun comparing "first child syndrome" purchases. Bedding, stroller, clothes...insanity. LOL!

Ellen, thank you so much for sharing this. It's almost eery how similar our stories are, except that Daniel was a month early and I didn't have a c - section (I was supposed to have an emergency one, and the only reason I didn't was because the hospital was understaffed that night). We saw a neurologist who specializes in pediatric stroke when Daniel was 2, and she was able to pinpoint that his stroke occurred in my fifth month of pregnancy. Still, I've always wondered if perhaps something happened during birth that could have caused it.

My heart aches for you. I've wanted to ask you the story for a while, but didn't think it was appropriate. Sometimes I think Sean and I were lucky to know that Emmett had issues *before* he was born. I can't imagine being blindsided by it.

Wow. Can I relate! My situation was so different, but the feelings are the same.

I wasn't "so ready" for a child at first. After all, we had already adopted Bubba (that's not his given name, we're not total hicks--all the men in our family have "B" nicknames--it's a silly tradition!), and we knew he was "developmentally delayed" due to his biological father throwing him against a wall. He was a handful (stil is) and we were doing OK, just us three.

My pregnancy was a total surprise, the birth control failed, apparently, and in fact, I was pregnant (and going out stepping on Friday nights at the bar with my husband--and all that entails) for a good two and a half months before I realized that something wasn't right. I was having periods, they just weren't "normal."

Yeah, how could I be so stupid? Well, I was. I beat myself up every day. Sometimes the guilt just rips me up.

Still, I figured, (in a "bargaining" kind of way) well, we have Bubba, I've checked "that" block--this child will not have any "issues." I will MAKE it so!

I did the whole eat right/prenatal vitamins/religious doctor visits the second I realized I was preggo, wouldn't let my husband smoke in the house, wouldn't let ANYONE smoke in the house, no tuna, you name it. If it was good for me, I was on that train. If it was bad, I wasn't having any of it. I was going to be healthy as healthy can be, went to exercise class and swim class and took the best care of myself that I could.

Delivery was a piece of cake. Buster popped on out with no problems. It didn't even hurt half as much as I expected (no walk in the park, but I really thought I was in for the rack). Everything was fine for awhile, but you know how you look, and you notice...well, as he grew, he wasn't hitting those "developmental milestones" and he wouldn't use his left hand for anything. He couldn't crawl right, couldn't sit up right, it was obvious that he wasn't firing on all cylinders. When I'd get together with other moms, it was pretty obvious that Buster wasn't keeping up.

The doctor "lowered the boom" on us and gave us the prognosis from hell. He really gave us a "worst case" picture. I don't know if he did that so we'd be "satisfied" with the amazing progress Buster has made, or if he was just being a reverse "whole ass."

I do the "what if" thing every day. I blame myself and there's not much I can do. I look a good ten years older than I did five years ago--talk about a loss of innocence! All I can do, though, is keep going. After all, I've got babies who need me. I do sometimes wonder if this is karma getting me for something I did in the past, or something.

With Jude we went to our lvl 2 sonogram. We were amazed to hear our "girl" was now a "boy", they had made a mistake on the last sonogram. Mike was SO SO thrilled we were having a boy. Then suddenly the perinatilist got very quiet and kept scanning Jude's brain. That began the months of worry, research, and more and lead into a path laced with medical terms and tears.

Ellen, This is starting out as an amazing and eye-opening story. Isn't it odd how CP can be so unique to each case. I have another friend who carried full term, and the chord was wrapped around her daughter's neck. With Regan she was a preemie (24 weeker). Thank you so much for sharing Max's Story.

Ellen, I relate to that story in so many ways, it really was difficult to read at points.

My memories of excitement, happiness and wonder in the days and moments leading up to Kasia's birth can still make me sad today if I dwell too much. Like you I had no idea what was to come and unfortunately the news was swift and brutal.

Thank you for sharing your story with us. I hope you find solace in writing it and comfort from those who have travelled the road along with you.

Thank you so much for sharing that. I know that it can be extremely hard to dredge up all that old stuff.

I wanted to say that first because I want you to know that I read the whole thing and now I'm going to say something that sounds crazy. . .

here in Louisiana, the culture still has a lot of French influences and Mignon means "little cutie" in Cajun french. If I have a girl then her middle name will most definitely be Mignon. The reason it will be a middle name and not a first is for the reason you mentioned in your post. . . people from other places immediately think steak. What if she wants to move? Sorry, just thought that was really funny.

Oh honey. I know how hard this was to write, and I know the next chapter will be even harder. And I'm so proud of you for putting it all down. There is peace in there, I know. Now pass the kleenex and pour another glass of wine before you start this next part.

Ellen,After reading your/Max's story i am in awe at how much our stories are similar and then to read allll of the comments from other people as to the same thing it is just earie! when our daughter was born and suffered her bleed all we were told by the dr's was "the brain is like a walnut" and i was like, "what are you talking about" they were trying to give me an anatomy lesson and i was trying to figure out what was going to happen to her. anyhow, 17 years later we have the most loving daugher with cp! following you now from the twittermom's group..hugs,shelley

Thank you for sharing your amazing story so honestly. I have tears in my eyes from you said the happiest day became your saddest. These little people inside of us are ours and we love them from the moment we find out were pregnant. I am so happy to see pictures on your blog of your wonderful little boy at an older age. I have 3 little boys...boys are awesome little creatures!

Ellen---Thank you so much for sharing Max's story. This is Emily Hansen your FB friend. I believe that my Porter also had a stroke at birth or just before. It took us nearly a year to piece it all together. I just want you to know that I think you are amazing! I find it very therapeutic to tell others our story. I hope you will too. Porter is almost 11 and now that I have some time to distance myself from it, it becomes much easier! Bless you and your family!

I got lost in Max's story. You're a wonderful Mother, and I can only imagine how hard this was for you to write, but at the same time it has to bring joy too. I also love the pic on your blog of your daughter signing Max's name to her drawings. Hugs to your family!

Hi Ellen,Oh my goodness! I don't even know what to say. What an ordeal. This is my first visit to your blog and I appreciate that you found the strength to share your story. Based on his picture in your blog header I know that Max is ok and beautiful! I'm off to read part 2!Michelle

Ellen, thank you for sharing your story. It was incredibly moving. Parenthood is full of ups and downs but worth the trip. I hope sharing your story is cathartic and knowing you have many people out there to support you

Ellen- i found your blog on a facebook fanpage for lancome... but i dont even care. I'm 16 and thought it would be nice to win it for my mom... but i read the description under your blog name.. "a blog about kids with special needs/ and parents who adore them." im actually only 16 but i have a brother who was born with cerebral palsy, mild forms of autism, ADD, ADHD, and about 5 other diagnosis'. i am very familiar with your experiences. its so refreshing to hear your story because not alot of people understand and can not possibly understand the difficulty my brother's disabilities bring. As a 16 year old, sometimes i wish he could just be "normal", i wish that my parents wouldnt have to deal with all the deal with and that i could have an older brother who would take me out for ice cream, and who was the star football player at my school. its so nice to know that im not the only one. the only one thats sometimes disappointed and frustrated; but i also know that im not the only one whos still fighting, who still loves these boys with all my heart and will never give up. thank you again for everything. for being honest and expressing feelings that i feel all the time, and sometimes feel like no one else knows about. its such an inspiration and i admire you alot for having such strength. blessings to you and your family (: your son is beautiful and is very lucky to have a mother like you. i will very much continue to keep up with your blog!

SOOOO glad to have found your site. As a mother to a precious bundle of high intensity cuteness with special needs, Evelyn, I was feelign alone and hopeless. Finding your site has helped me to re-connect. I still cry daily..... still reading through yoru site and beign a human sponge! Just wanted to share our blog http://evelynelise.blogspot.com/

Just found your blog through the GH article. I just had to write you. I am a 43 yr. old SAHM with 5 kids. One by birth & 4 by adoption. My youngest 4 are all bio sibs & have mild dev delays. Parenting special needs kids is such a challenging, but amazing gift. I also had a stroke as an infant and have mild CP as a result, spastic hemiplegia. I have had my share of challenges, but I find a way to do anything I set out to do. My disability gave me the gifts of compassion, emphathy and the drive to encourage my children to believe in themselves. Thank you for sharing your story, it is inspiring to so many.

Ellen, when I read September's issue of Goodhousekeeping I was shocked. I have a 13 year old daughter named Kara who also had a stroke at birth. For 4 months we didn't know about the stroke, she started having seizures at 5 months old. The small town we live in the doctors had no clue what was wrong, and told me I was a young first time mother and worried too much. To make this kind of short she had to have surgery in 2000 to stop the seizures, which by the grace of God worked, she is now 13 walking and in full teenage mode. She doesn't talk but communicates her wants. I understand your love for Max because Kara is my life and I thank God for giving her to me. God bless you and Max.

Your experience is both beautiful and heartbreaking. Thanks for having the courage to share it. I'm hoping that this was healing for you when you wrote it. I can not imagine anything like this. I've had two preemies and two full term ... my heart goes out to you and your family. I'm about to read part 2; I just needed a break as my emotions began running over.

Greetings all, I wish to share several things with all of you here. The first is a short quote that saw me through several times "I cried because I had no shoes until I met a man that had no feet". While my life was harder than many, I know there is always some one out there having it worse than me. I do not mean that to belittle others, for we each fully carry the burdens given us as if they all weighed the same, such is the experience of life. Another 'see-me-though-this' is a very short piece I copied to my FB and written by the wonderfully humorous writer, Erma Bombeck, R.I.P. http://www.facebook.com/note.php?note_id=246848334189

My sons story is a bit of a long read, but if you wish to do so, here is most of the story. Due to the original location the story was pub'd to I left a significant factor of sexual abuse by his step sisters that I was not even aware of until he was almost grown. http://www.facebook.com/note.php?note_id=250085339189

Finally a poem I wrote for those who have lost a child, for whatever reason ( I lost a premie son prior to giving birth to Steven) http://www.facebook.com/note.php?note_id=378743739189

I had a sister, Annie, with cerebral palsy who was born a year after me. She was much more disabled than what Max seems to be from what I can tell by looking at the pictures. (I haven't had a chance to read through much yet.) You are so lucky.

Anyway, after Annie died in 2009 (at the age of 51) I wrote a memoir about her that I hope to self-publish someday.

I also am trying to start a blog about developmental disabilities that can provide both information and inspiration. I haven't been able to work on it much, as of yet.You can find it here www.anniememoir.wordpress.com

If you have a chance, take a look at it and see if you and Max would like to participate in some ways as contributors. Perhaps we could just repost some of your posts from here from time to time. At minimum I would like to be able to link your blog to the site.

Hi, I just stumbled upon your blog from Parenting.com and was completely intrigued. Both of my brothers have Aspergers, so some of your stories really hit home. Your family is very inspirational (:.

After reading Max's story, I started thinking about the brain damage he suffered and was wondering if you have ever looked into hyperbaric therapy. It exposes the body to oxygen at levels beyond what we are exposed to on a daily basis. It's often used to help regenerate tissues after major damages in sports, etc. A friend of my family runs an office with chambers now, as it helped her daughter walk after suffering lesions on her brain that left her wheelchair bound. I'm not saying it will completely repair the tissues that were damaged in Max's stroke, but I feel that it may be worth a try for your family. I've seen it work wonders with my brothers as it opens up new passages through the brain to help with new ways of thinking and motor skills. Here's the website of a foundation that provides it to children in my community, just to give you a feel for it.http://healingkidswithhbot.org/?page_id=11

Hi I was just read your story about Max I too have C.P. and the names and being made fun of as a child.was not easy I am so glad have you and Dave as parents.the Dr. can do so much these days.I was born in 1959 and at 1 pound 5 0uces I am glad I am here....I didn't have a supportavieme. family,back then not much was know about C.P. and not much was done for.I got married and I HAD a miscarriage and never tryed to have any more children. my own sister's called me a retart and stupid and I was a sad child many times I wanted to DIE but God HAS ME ON THIS earth for a reason and i am going to stay so I can find out?good Luck to your family

Came across yr blog through facebook post and Im so glad I did. Reading your birth story brought tears to my eyes from beginning to end. I completely understand how u felt. I went through very similar circumstances but I didnt get answers until my son was 6 months old. I want to thank u for this blog I am going to begin to follow this blog. Us Moms need to stick together.

Dear Mrs.Siedman,I too have a child with cerabal palsy.My daughter Shelby who is 18 has axtasic CP.She has leg braces and hours of therpey every week.In a month my baby girl is graduating high school.Shelby has a cognative hearing impairment and has vision impairment as well.

I didn't realize just how much we had in common until I read Max's Story. I tend to imagine that Betty Boop is the only one with monstrous issues. Unfortunately, the sad and disturbing fact is that there are lots of sick kids out there. I'm sorry that Max, and you had to go through so much. My prayers are with you. I'm glad that we connected!

I have only just read the first part of Max's story. It brings back a lot of memories. I was young and healthy and did "all the right things" during my pregnancy. We got "lucky" that I was measuring so far ahead of where I should have. At 30 weeks my doctor decided I should have an ultrasound (back then they didn't do routine ultrasounds). He thought maybe there was too much amniotic fluid. This was pre-internet so I couldn't scare myself to death with google thankfully. The scan was on a Friday afternoon. Sunday at 8pm my OB called me. There was pretty much no amniotic fluid around the baby and his kidneys were severely enlarged and cystic. His bladder and ureters were huge as well and his abdomen was larger than his head. We had to go out of state to see a high risk pregnancy doctor. More scans and they told us our baby had posterior urethral valves (PUVs - a little piece of tissue that isn't suppose to be there that blocks urine from getting out of the bladder). The doctor old us that babies like this die, but we were young and could have other children. Anyway, his story is VERY long (thankfully!!!) and the fight to keep him with us has been a struggle at times, but so worth it. He also has autism, which strange as it may seem has been harder to deal with than dialysis, surgeries, feeding tubes, etc. That baby that was never suppose to be born alive will turn 21 years old next month and in June we will celebrate his 16th kidney transplant anniversary (pediatric kidney transplants don't usually last longer than 10 years). I'm sorry that you and Max have been given this struggle, but it sounds like you are the perfect mom for Max. I always wanted to write a book (no blogs back then!!), but just never got around to it or could articulate what I wanted to say. Thank you for having the courage and talent to share your story.

Thank you for sharing with us your story. I have the same story with my six years old son, and I have the been thinking what I well do and been send for the rest of my life. and this have chaired me up.

My situation was totally different. When I was twenty weeks pregnant, the doctor informed us that one of my babies Noah had SB, spina bifida, hydro and clubbed feet. Me and Connor (my partner) were shocked. To cut a long story short, both boys were born 1st July 2014 at 2pm. I didnt enjoy the rest of my pregnancy because I was terrified and considered but decided not to terminate.

Decided to chip in as a 70 year-old who has just discovered from an MRI brain scan that I had an undiagnosed stroke at birth. I am the firstborn of female twins and it was a first pregnancy and a vaginally delivered double breech, forceps delivery (in China). I have no mental impairment (high IQ) though have always had memory problems.Aspergers did not exist as a diagnosis here in the UK until about 20 years ago and soon after I was diagnosed with Aspergers and ADHD. Further research has shown both conditions are strongly related to birth injuries, especially stroke (cerebellar stroke for autism).